Assembly Resolution No. 1312

BY: M. of A. Rules (McDonald)

MEMORIALIZING Governor Andrew M. Cuomo to proclaim
June 24, 2018, as Cystinuria Awareness Day in the
State of New York

WHEREAS, It is the custom of this Legislative Body to recognize
official days that are set aside to increase awareness of serious
diseases that affect the lives of citizens of New York State; and

WHEREAS, Attendant to such concern, and in full accord with its
long-standing traditions, this Legislative Body is justly proud to
memorialize Governor Andrew M. Cuomo to proclaim June 24, 2018, as
Cystinuria Awareness Day in the State of New York, in conjunction with
the observance of National Cystinuria Awareness Day; and

WHEREAS, Cystinuria occurs in individuals in which a rare genetic
defect prevents the body from regulating amino acid concentrations,
subsequently leading to elevated levels of cystine and the formation of
cystine stones in the kidney, ureter, and bladder; and

WHEREAS, The American Urological Association recognizes Cystinuria
as the most common monogenic kidney stone disorder; and

WHEREAS, The majority of Cystinuria patients start to suffer from
chronic cystine stone formation before the age of 20; and

WHEREAS, Cystinuria patients often endure episodes of debilitating
pain (typically known as renal colic), nausea, vomiting, and recurrent
urinary tract infections; and

WHEREAS, The majority of Cystinuria patients will require numerous
stone removal procedures and surgeries; and

WHEREAS, Studies have demonstrated Cystinuria patients have worse
health related quality of life than the general population, specifically
in areas of general health, bodily pain, and mental health; and

WHEREAS, Cystinuria patients may suffer from life threatening
complications, such as hypertension, renal insufficiency, end stage
renal disease, and the need for a kidney transplant; and

WHEREAS, The majority of Cystinuria patients forming recurrent
stones will develop some form of chronic kidney disease in their
lifetime; and

WHEREAS, There is no cure for Cystinuria, treatment options
significantly reduce medically necessary surgeries and some patients can
live a stone-free life; and

WHEREAS, Cystinuria can be diagnosed from analysis of a 24-hour
urine test; and

WHEREAS, Detection may be improved by increased education and
screening, as many patients do not receive a diagnosis until after
enduring one or more stone episodes; and

WHEREAS, Early diagnosis is important to the long-term management of
a Cystinuria, which can potentially limit permanent kidney damage and
persevere maximal kidney function; and

WHEREAS, One in every 10,000 Americans are believed to be
genetically at risk for Cystinuria; and

WHEREAS, Cystinuria has been documented as a leading risk factor for
one of the top most common forms of kidney stones; and

WHEREAS, A significant economic burden is associated with kidney
stones, with annual estimates exceeding $5 billion; this economic toll
includes both direct treatment costs, and the indirect costs associated
with lost worker productivity; and

WHEREAS, Doctors at New York University-Langone have world-leading
expertise on Cystinuria; and

WHEREAS, Well-supported research funding for Cystinuria will lead to
improved screening and treatment, improved quality of life, and expedite
the development of a cure; and

WHEREAS, This Legislative Body encourages steps be taken to raise
awareness of and increase public knowledge about Cystinuria; to inform
all people in New York about the dangers of Cystinuria; to disseminate
information on the importance of early diagnosis and management of
Cystinuria patients; to support research funding of Cystinuria at New
York medical research centers to improve screening and treatment for
Cystinuria; to support efforts that may improve the quality of life for
Cystinuria patients; and to develop a cure for Cystinuria; now,
therefore, be it

RESOLVED, That the Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim June 24, 2018, as
Cystinuria Awareness Day in the State of New York, in conjunction with
the observance of National Cystinuria Awareness; and be it further

RESOLVED, That this Legislative Body pause further to call on the
people of New York, interest groups, and affected persons to promote
awareness of Cystinuria, to take an active role in the fight against
this devastating disease, and to observe National Cystinuria Awareness
Day with appropriate ceremonies and activities; and be it further

RESOLVED, That a copy of this Resolution, suitably engrossed, be
transmitted to The Honorable Andrew M. Cuomo, Governor of the State of
New York.